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The information contained herein is personal information provided by participants of the subject trials that are also members of EFFORTS.  Further information regarding these trials may be found by clicking on the above title.  These are government trials.  Information contained herein when referred to as NETT is that furnished by the NIH.  Personal comments of those sharing their experiences are their own and is presented as their personal opinions only and are not meant to reflect any more than that.  This information is meant to be shared by the patients and participants.  This information is being compiled by Gary Bain at 

 Eddie Hickinbotham 6/27/99
Gary I don't know about other places , but at Houston where I went through the NETT program { and still in it} the biggest thing I see from the bills etc. to Medicare, They are more interested in money than anything else. Very few of the people I was with got the operation and they want you to spend your money for all of your expenses with no reimbursement. maybe that's the way it is but I think it stinks. ed in ok 

Jim Solver
Someone wrote in asking for info on NETT. I am registered/enrolled in the NETT at Duke University, and have an appointment 9-28-99.
I can not tell you specifically what they check to determine whether you are a viable candidate, except that there was a lot of blood work, a lot of breathing tests, arterial blood gas readings, x-rays no older than 6 months, and a CT Scan.
For some reason or another, it is very time-consuming. Duke had my packet in early February '99. In April '99, I sent them an E-Mail asking if they had recd my packet. I recd an almost immediate reply, apologizing that they had taken so long. They said I would be receiving a letter with instructions.
When I recd it , it was dated near the end of May - I recd it 3 weeks later in June. I mention this so that you are informed that it is a long drawn out process!
But, in the letter was a set of instructions and info as to what I could expect during the 8 days for which they had me scheduled. Much of it was exercise or phys/pulmonary rehab. One of the main other things was a heart catheterization.
I can tell you nothing more, except that I will be leaving in 10 day or so for my appointment. I hope to have access to some sort of computer in order to keep friends & loved ones informed. Jim Solver FL 

Shirley in Mass 9/21/99
Gary, I go into Boston next Tues. for 8 hours of tests. I cant send you literature that I have on it because I only have a web T. V. I go in for all the tests Catkin, Blood tests & Echocardiogram so many kinds of tests. Then in a week I go  for 4 hours worth of different tests & again a few days later. for 4 more hours. You must be a candidate for LVRS & they decide who will have the operation. If you need info you can let me know. This is thru the NETT. Shirley in Mass 

10/09/99 George L. Steinbach-TX
We just came back in San Antonio, but only for the weekend. Have completed only the first two days of the phys exams, have two more next week. First day: Pulmonary testing, chest x-rays, and CT scan. Of course a lot of paperwork and life history. Second day: Myocardial perfusion, dopamine stress study, Echocardiogram, and physical exam with briefing.
Needless to say, I'm dragging, and be glad to climb into my own bed.
Monday, it's Exercise testing, O2 titration, 6 minute walk. Tuesday.
Doctor reviews results with me, quality of life, and questionnaires. This is also the first selection point. If approved, rehab time! if not, back to the house!
All of this from the schedule given to me when I checked in.
Can't say enough about the Methodist Hospital. They really have their act together, and the best professional (and most pleasant) personnel I've ever seen. Really a first class facility The Baylor College of Medicine is just across the street. They only provide managerial control at this stage. The Houston auto traffic is among the worst I've ever seen in my travels anywhere, even overseas. Houston is only 3 hours from SA, 200+ miles. Have to check back in at 6;45 Monday morn.
Plan to keep a diary on the entire operation, at least as far as flunk-out date. More later.
Betty: Hope you didn't try to contact me at the address I'd given.
That place was a trash dump, had to stay at the Holiday in desperation.
(Sure hurt the budget)
Agree my experience could help others, especially those bound for the Baylor - Houston Methodist Hospital program. I do plan to keep a daily diary, including out-of pocket expenditures. The motel "dump" I referred to was on the Baylor suggested list. Our problem was a small Bichon dog that limited our choice of motels. I had made a confirmed telephone reservation, (they accepted pets) and when we claimed it on the night of the 6th, Laura walked in and announced, "The dog and I will sleep in the car!" Made some frantic phone calls and found a bed for our bods. Drove an extra 40 miles to park the dog with Laura's sister. Finally head to pillow past midnight. Finally found a nice newly refurbished motel suite, reasonable, on call transportation to hospital and other facilities. And they accept small pets! This time we walked thru the rooms! This is our next week home So Sunday mid-afternoon, we hit the road back to Houston. My future NETT involvement will be up to the assigned Baylor Doctor Yes, You can post my information to the list as I would do that at some time. I'll continue this epistle in a week after the remainder of the initial exam and Baylor decision. My dog travels with me, but the computer stays at home.

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